TRIPLE POSITIVE GROUP
Comments
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kthielen - I had a total hyst/ooph nine years before my breast cancer diagnosis, so it possibly delayed my diagnosis, but I also had a long history of breast issues.
chrissie - my experience with post recon exams is a visual look and physical exam, including axilla. Some recommend periodic MRI - every few years to check for integrity of the implants, but that can be a hard sell for insurance.
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Thanks guys for the congratulations. I didn't tell anyone, even my Mom, but I had found a lump in my right breast, so I was a freaked out mess going to that appointment. Turns out it was just a bit of scar tissue and has been there a long time. I played lacrosse in high school and college and those balls are like flying rocks, plus I'm always whacking my boobs with a shovel in the garden. My breast surgeon was not in the least bit concerned.
Bren, you look FABULOUS in your new picture!! Sorry we didn't get to meet up in Philadelphia this Christmas. I'm home in July so let's definitely start planning something and get the other Philly gals including Debiann together! Ella, you'll have to join us :-)
And Momma, a few weeks after my biopsy and diagnosis, I had a nurse filling out my info before my first exam by my MO, and she said "I see here you are Her2+, congratulations!" and she gave me the thumbs up. We all are so blessed to have Genentech/Roche and Dr. Slamon!
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http://time.com/3650194/most-cancer-is-beyond-your...
I found this very reassuring. Maybe we can all stop blaming ourselves for getting cancer. Come on, I know you do it. I'm the queen of "I used to smoke...I lived in center city Philadelphia forever and breathed all kinds of junk on a daily basis...I'm a wino/cheese doodle addict who never chose fruit over junk..." It goes on and on. So maybe it is just dumb luck and a confused stem cell?
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Woot! Congrats Pbrain!!
You 're the doctor but from all that I read it seems Her2 pos is where to be if you are unfortunate enough to get BC... ER pos too despite all the S/E's.
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PMR53 GOOD LUCK!!! TCH+perjeta kicked my butt so bad but it works wonders!!! if all goes well, after your first ultrasound you will see a reduction in tumor size! don't give up, stick with it and try your best to stay extra hydrated prior to chemo. you should also anticipate sitting in the bathroom with severe diarrhea from perjeta. best of luck!
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Looks like there is a very big
"Potential Practice Change in Small HER2-Positive Breast Cancers"
"Patients with small HER2-positive breast tumors can be treated with less intensive chemotherapy than has been commonly used and still have optimal outcomes, new research indicates."
Wonder how perjeta fits in here.....
http://www.medscape.com/viewarticle/837703
http://www.nejm.org/doi/full/10.1056/NEJMoa1406281
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Saw my new young whipper-snapper onco yesterday. I had asked to be transferred to the MD Anderson center closer to my home instead of driving into downtown Houston. Because of my LVEF dropping from my usual low normal of 56% down to 35%, she is stopping Herceptin altogether. She says IF my heart recovers this time (I'm now taking 2 new heart meds), and I restart Herceptin and my LVEF drops again, there is no guarantee that my heart can recover next time.
She gave me a prescription for Tamoxifen instead of Arimidex because of past history of osteoporosis (I've had complete hysterectomy + post menopausal).
I also take Armour thyroid for hypothyroidism so she wants me to see the endocrinologists located at MDA center downtown Houston. Since the only cardiology dept is also at MDA downtown Houston, I really didn't gain much by moving my onco appointments to the center closer to my house, especially since I don't go back to see her for 3 months. Doesn't matter though, I really liked her.
I got the impression that she felt that I was probably over treated with 4 TCH infusions for my itty bitty tumor and when I told her that I had actually been scheduled to get 6 TCH infusions (my body gave up after 4), her eyebrows went up. I knew my previous onco was fairly conservative.
Anyhow, here I am, hot flashing in Houston (before even starting Tamoxifen) and realizing that my treatment is stopped short but hoping it was long enough. Also hoping that my next echo shows some LVEF % improvement and the shortness of breath gets better. Looking forward to getting rid of the port!
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ashla and blownaway it doesn't look like any of these patients were hormone positive so you may not have been over treated
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blownaway - sending lots of hugs your way.
Had my first Lupron shot with my Herceptin Wednesday. I usually have a Tamoxifen headache. The infusions typically make it worse for a few days. This time it is crazy bad. Each cycle has been slightly different for me. But I'm wondering if the Lupron is involved. Has anyone else has noticed a headache from Lupron?
One good SE from the Lupron - the hot flashes at night meant that I could take off one of the 3 down quilts...hahaha...Lupron, the cure for a cold winter. Just glad its not summer!
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Blownaway, I too had my H cut short because of low EF. Went from 57 to 42. My MO didn't even want me to try to get back on it. I hope if I need it in the future I still can take it then. I had about half of the recommended number. I had my 2nd 3 week H when it happened. So i know what you mean. My EF did recover to 58 at my last MUGA/Echo. (Had both). Here's hoping yours does even better.
Much love to all.
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SpecialK - thanks for those links! So much helpful info here on these boards. My MO is refusing to offer anything other than tamox (I can't do AI due to moderate osteoporosis of the spine). so, no TH no H by itself. Very frustrating, but still holding out for ATEMPT study. MO was supposed to present my case yesterday to a review board (of other young doctors) but I have not heard an outcome and she suggested it may be Monday before she has time to call.
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Momtothree - My MO just prescribed Tamoxifen to me also due to osteoporosis. I no longer have uterus or ovaries and it appears to have about the same s/e's as AI's.....
Hope we both can tolerate the stuff.
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Blownaway - I fainted (first time ever) and fell onto my wood floor earlier this year. Woke up in pain moaning that I had broken my back and indeed I did. Fractured T5 (usually reserved for something more adventurous like a gunshot wound, car accident or falling quite a distance), my sacrum and first ribs on each side. Never knew I had osteoporosis until then, despite annual bone density scans. I'm in the running for queen of weird diagnoses as I have a resistance to parathyroid hormone which in layman's terms means my body cannot convert Vit D to the active form which bones require. As much as I would like to take an AI, I'm on the tamox train with you :-) I'm also in the Houston area. Maybe our paths will cross down at MDACC some day?
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Hi ladies. Just read this article re: perhaps chemo will no longer be part of standard treatment protocol for HER-2, node-negative patients whose tumours are less than 3 cm.
http://www.medscape.com/viewarticle/837703
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That would be nice but remember it is only a 3 year study at this point:
Nonetheless, this was a nonrandomized study, and many of the patients had breast cancers that were hormone receptor (HR)-positive (in addition to their HER2-positive status), he observed, referring to the 67% of patients who had either estrogen- or progesterone-receptor-positive disease.
"As these types of cancers tend to recur later, longer follow-up of these patients would be helpful in revealing the true risk level associated with their disease," Dr Opyrchal told Medscape Medical News.
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I wonder if the oncotype test could be given. I know right now it isn't given because chemo is automatically recommended for Her2+ (Over a certain size). How would a triple positive diagnosis affect the score? Would they all come back needing chemo because of the high grade tumor and Her2 status? I don't know enough about the oncotype test to know how it works. It would have been great not to go through chemo but I'm not sure I would have felt comfortable doing it. I'll be interested in seeing the results 10-15 years from now.
For now I'm going to celebrate my eyebrows growing back in (even if they are darker than normal) and my eyelashes growing longer.
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momma - Oncotype Dx is not given to Her2+ patients because the test is not designed for it. The Mammaprint test can be used for Her2+, and hormone negative patients, as it does not have those same parameters. Here are the blurbs for both:
http://breast-cancer.oncotypedx.com/en-US/Patient-Invasive/GettingTested/AmIEligibleForTheTest.aspx
http://www.agendia.com/patient/breast/
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Maybe I didn't ask the right questions or I'm interpreting that study incorrectly. What I read is that women who are Her2+ with tumors less than 3cm would no longer need chemo. They would get Herceptin and Perjeta. What Lago had pointed out was that ER+ BC tends to recur later so they needed longer follow-up. The oncotype DX was designed to determine if those women would benefit from chemo (ER+/Her2-). As a triple positive we have to worry about early and late recurrence. What if they eliminate the chemo for the Her2 part but we would have benefitted from chemo for the ER part? So maybe the mammaprint test will routinely be ordered for triple positive?
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If you look at the size breakout of this study 90% of the patients were stage 1, node negative, less than 9% of the study population had a tumor greater than 2cm - and this is a limited scope study, only 406 patients.
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Who knew there were tests for HER2+. I was told, nope, 2cm ER+, PR+, HER2+, you ARE getting TCHP, hence no need for a 'test'.
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susanhg123
I have been away from the board for awhile and have been trying to catch up reading. Your pain sounds a lot like mine. I finished TCH in October finished radiation the week before Christmas and just had my third herceptin only infusion this past Friday. My pain wakes me up at night and I am getting around like a old woman. I hurt all over. My arms from the elbow down and my feet, heels especially are killing me I am worried I sm basically turning into a cripple! I have always been healthy and active before all this but these treatments have really messed me up and the mental thing is another whole nightmare but..... What I wanted to tell you is my MO told me that at this point the steroids have left my system, and because the chemo has stopped my estrogen production it is killing my joints and bones! She says it will get better with exercise and she has prescribed some kind of anti-anxiety med that I haven't started because I am afraid to. I don't know if that sounds like your situation but it may explain your pain. And even though they tell me I m cancer free my mind is constantly going down dark sad roads....and Iam normally a very upbeat person. I am so ready to get back to myself!!
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knm - the test referred to are the diagnostics to determine your Her2 status. It is possible to not overexpress Her2 enough to warrant systemic treatment. One type of test has a more pos/neg result, the other is a numerical score. It used to be that to be treated you had to score a 3 or have a pos result - here is the link to the types of testing:
http://www.breastcancer.org/symptoms/diagnosis/her2
agent - how fast is your Herceptin run? Some experience less body aches if they try a slower drip - 90 minutes. Have you started to take hormonal therapy - it can also cause joint/muscle aching.
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no hormonal therapy yet my dr said she needed to get my pain under control first and I get my herceptin in 30 min. I definitely think I may ask them to slow it down because so many people say they have no problem with herceptin only but it is knocking me off my feet
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agent - I had immediate relief when I slowed mine from 30 to 90 minutes. I had so much pain after the first H only run in 30 minutes that I could only sleep for 15 minutes stretches due to hip and leg pain. Good luck!
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I finally stopped feeling like a 95 year old woman! It took a long time, and exercise is what helps my painful joints the most! I use my TVs "on demand" feature a lot. The ten minute workouts are great!
Agent: I know what you mean about getting back to yourself. I remember a few months ago when someone asked me how I was doing, and I said "I'm back!" It just popped out of my mouth, and that's when I realized that the old me was back. Great feeling!! I hope you get there soon!!!
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Thanks Special and Maris. I will definitely ask to slow infusion to 90 min. I didn't know it could make that much difference! Right now I hurt too much to start any kind of exercise
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How long does the effects of the 30 min Herceptin drip last? I've been having a lot of stiffness since chemo ended. I asked my MO if it was from being thrown into menopause. She said no, it was from the chemo. I didn't have this stiffness when I was going through chemo though. At first I thought it was because I started exercising too fast, too soon. It's mostly after I've been sitting for a while and getting up first thing in the morning. I'm going to see if I start feeling better as I get farther out from this infusion.
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4 months post chemo and 3 months post bmx and recon and very happy to say I'm starting to feel more like myself too! Last week I realized I was "back" when I was offered an opportunity to pick up extra hours at work providing instruction after school to a homebound student and I didn't even hesitate before saying "yes". Before my DX I had two homebound students, but had to give up the hours due to treatment and fatigue. I'll be seeing a 5 year old with multiple disabilities who now has eye cancer! LIfe can be really cruel.
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Agent 99, I have a very hard time not going to those dark places too. Since "cured" can't be 100% guaranteed, I keep thinking the worse. I finally found that the best way for me to cope was to accept my fears and get on with my life. Now when my mind goes to the dark side I say to myself, "I may one day have a recurrance or even die of cancer, but TODAY is not the day so I won't ruin today by thinking about it." I was never good about living in the moment, too much of a planner, but I'm working hard at learning to just relax and enjoy each day.
I hope you are feeling better soon.
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when I had my first loading dose of herceptin I had the hip and thigh muscle pain as well, I told my MO if the pain was going to be like that I wasn't sure I would continue, Percocet helped, I told him I didn't want the infusion speeded up, he kept it at 90 min and the last two treatments have been ok, just muscle stiffness, I have my last taxotere/ herceptin/ perjeta combo on Tuesday, then I start herceptin alone every 3 weeks to complete the year, I'm going To insist we keep it at 90 minutes
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